Baylor leading fight against Multiple Myeloma

Baylor leading fight against Multiple Myeloma

PHOENIX -- Don Baylor is a former star baseball player and manager who is now the hitting coach of the Arizona Diamondbacks. But more importantly, the man they simply call "Groove," is a Multiple Myeloma survivor. And in that, he is way beyond the curve.

The mean average of living with a cancer that attacks plasma in the bone marrow is five years. Baylor was diagnosed with the disease when he was a coach with the Mets in 2003. He is now in the process of raising $100 million for the Multiple Myeloma Research Foundation.

"The regular cancers have had so much money thrown into the pot, and like Multiple Myeloma, we still can't find a cure," Baylor said this week before a game at Chase Field. "This is a specialized cancer. Maybe we can bring up awareness for Multiple Myeloma. Prostate cancer is men. Breast cancer is women. This can strike anybody. It skips one person and gets another. You don't even have to be a certain age to get this."

According to the American Cancer Society, one in every 149 people has a chance of contracting this deadly disease. Former big league pitcher and heralded pitching coach Mel Stottlemyre is also a longtime survivor. But it has taken the lives of such high-profile patients as one-time vice presidential candidate Geraldine Ferraro, baseball's Vern Ruhle and Moe Drabowsky, hockey coach Roger Neilson and basketball's Bill Musselman, Flynn Robinson and Phil Smith, to name a few.

After working in the cages with a number of D-backs hitters, Baylor, who will be 64 next Friday, stopped to talk about his journey.

MLB.com: So tell us about the fundraising effort.

Baylor: We're trying to raise money to develop a system where doctors all over the place are able to share information. That's the hardest part. East Coast, West Coast, North, South so everybody can put this data together to come up with something collectively. It's almost like a second opinion, a third opinion, a fourth opinion. It's something that hasn't been done. Sometimes doctors get their patients and hang on to them. They don't find out what's out there that maybe can help.

MLB.com: There can't be that many Multiple Myeloma patients that there isn't a database with everybody in it. According to the American Cancer Society, 22,350 new cases have been recorded. Overall, 10,710 have died.

Baylor: You'd think that that's the way it would work, but that's not the way it has worked.

MLB.com: So basically, you want to put together a database.

Baylor: Yes, basically. Not like the one the government has, one that can save lives. It's getting a little dicey. You have to get funding for that. It doesn't come from the government. You have to do it yourself.

MLB.com: So how far have you gotten in those fundraising efforts?

Baylor: About halfway. Mel Stottlemyre will also be a representative with me. It's something that's so important. I coached with Vern Ruhle. He lost his life to Multiple Myeloma at 55, a really young age. Maybe something could have been done. Not aggressive, but maybe with some other opinions. I'm not saying anyone should change doctors, but sometimes another voice is really needed. I've been involved with Cystic Fibrosis since 1978. The thing I've seen with kids, who were 8 and are now in their 30s, is really something. So I know this kind of networking works. We're going to find a cure for Cystic Fibrosis here shortly.

MLB.com: So you've had Multiple Myeloma for nearly a decade now. Mel was diagnosed in 2000. That's double the median time for survival.

Baylor: I just manage it and live with it. It doesn't restrict me from doing anything. I just go about my daily routine. When I'm in Los Angeles, I'll go to the City of Hope, because that's where my doctor is. He suggested that I also go over to the Mayo Clinic in Phoenix and get another doctor involved just so we can collaborate. They're both on the right page. It's something we're proceeding with.

MLB.com: How is Mel doing?

Baylor: He was a little under the weather. I talked to Mel Jr. during Spring Training. He said his dad is back to being ornery again and ready to go fishing again. So he knew he was on the rebound again.

MLB.com: So in the 10 years since you were diagnosed, have you seen any improvement in the treatment of this? Are they any closer to a cure?

Baylor: Yes, I've seen improvement with it. It's just like my mom, Lillian; she died at 59 of colon cancer. And the things they have today for colon cancer, they didn't have in 1989. Same thing when I started. Mel had turned me on to some people at Sloan Kettering in New York. They were great there. They suggested the City of Hope out in Southern California where I was going to be. The doctor out there has been great. So I've seen the progression that has been made, because of a lot of the things that are in the pipeline now that were not in the pipeline in 2003 and '04.

MLB.com: What's new in the pipeline?

Baylor: There's a drug regimen you can take: Revlimid (Lenalidomide). Twenty-one days on with a steroid. You can take Dexamethasone, another kind of steroid. There are days of rest. I know the late Geraldine Ferraro, she was in a clinical trial for Velcade. She did that for awhile. She was a little older than I was. So I don't know how aggressively the disease attacked her. I received phone calls from people who were afraid to tackle this. They didn't know what to do. There are ways now of dealing with this.

MLB.com: Do they still do the stem cell transplants? That's been a staple. I know you went through one very early on where they transplant your bone marrow to protect your bones from becoming too brittle.

Baylor: You have to have a match, and the bone marrow in my brother, Doug, was a perfect match. He's only two years younger. Because it was a perfect match, they advised me to use my own if you can. So that's what I did.

MLB.com: And the procedure is, they draw out the marrow, freeze it, radiate it and reinject it?

Baylor: Yeah, they put it back in. It was tough for me. You have to stay in the hospital afterward for 15 days in a bacteria-free room. Your immune system is zeroed out, pretty much. I'm an outdoors person anyway, so to be locked up for 15 days was pretty crazy. And once you're out, if somebody sneezes down the hallway, you have to get out of there. You have to just watch yourself for awhile. You're locked up in an airplane and have to breathe the air. There's nothing you can do about that. You have to wash your hands a lot. In restaurants, there are more germs on menus than there are on shopping carts.

MLB.com: And what do they have to do as time progresses?

Baylor: There's a bone marrow biopsy where they go into your hip, extract a bone and look at it. I did that again recently. That process was outdated, but now they can put you to sleep for 10-15 minutes and get a good read from you. My bones are absolutely hard. I was a Vitamin D milk drinker when I was a kid. My brother and I went through a gallon a day, it seemed like. That was a big help. A lot of times they look at the bones to see if they have any spots on them. That's a breaking down of the bones. I don't have that, which is good. My bones are healthy. But you have to look at the marrow to see if the disease is at bay or it's slowed down or it's smoldering.

MLB.com: There seems to be no rhyme or reason for this: why some people are healthy and others die.

Baylor: I imagine it's an attitude. It's a blessing from God. He leaves you here to tell somebody else, to help somebody else if they have it. I know my mom was very secretive about it when she had it. It was like no big deal. Back then, 1989, you just really didn't know. You wanted to savor life and things. And then it just overtook her. My dad, George, just passed away. He was 85. He lived a long life. But you want them to live longer. You always try to help if you can. You just have to take care of yourself and give back. That's the whole thing. That's what's important to me.